Summary
Type 1 Kidz (T1KZ) is a project for children and young people living with type 1 diabetes (T1D) and their families in North East and North Cumbia, facilitated by Investing in Children CIC. T1KZ aims to improve the confidence of children and young people (CYP), their health outcomes and clinical experiences, by working in partnership with all local clinical teams. CYP are at the heart of the project, which is led by a Young Person’s Coordination Group and overseen by a professional steering group
Innovation
Investing in Children (IiC) was established in 1995 as a partnership between Durham County Council and the NHS and now runs independently via the IiC CIC and the IiC Foundation. IiC promotes the rights of CYP and ensures that their voices are heard in decisions that affect them in public and voluntary sector services. IiC began working with CYP with T1D in 2001, looking at how they could have a say in their medical care and the service provided by the paediatric diabetes team in Co. Durham and Darlington. A group of CYP researched what was on offer at their local hospitals, new technologies and new ways of working. IiC developed a peer mentoring programme to provide a forum for in-depth discussion between peers, where they could share views on living with diabetes and get support to control it. A support session was added for parents, families and other adults. In 2012, IiC established Type 1 Kidz, an award-winning peer support group for CYP, parents, carers and families. Links with the CYP’s North East and North Cumbria Diabetes Network provided opportunities for dialogue between CYP, families and clinicians across the region, supported by IiC. The project has served the whole of the North East and North Cumbria Integrated Care Board (ICB) region since 2021. The purpose of T1KZ is to engage CYP with T1D in their own emotional health and well-being, promoting self-care and management through peer support, as well as giving them a space to build relationships with their paediatric diabetes teams and engage in dialogue that leads to change, service improvement and development. It is quality assured through the IiC Membership Award. Further, it aims to promote family-centred care, recognising the vital support CYP get at home, from parents, carers and siblings. Project success is measured through feedback from CYP and parents and an impact survey comparing the results before and after attending.
Equality, Diversity and Variation
Network funding delivers the project across the region to ensure all CYP have access to the same level of support. Feedback from sessions influences clinical practices and dialogue across the region addresses variations in practice and outcomes. ‘Harder to reach’ young people were not accessing the project because of lack of transport and/or parents being unwilling to bring them, so now a volunteer driver brings them. IiC has staff, risk assessments and policies in place so CYP can attend group sessions without their parents. Around 10% of the CYP had an additional need so the organisation worked with these families to set up a sub-group, allowing them to meet in smaller groups and quieter environments, such as sensory cafes and inclusive centres. Other sub-groups are the Under-7’s Group and Teen Group. Twenty laptops are on loan to children and families to help them upload their data to clinics, attend clinic virtually, plus access support and advice websites and groups.
Results
Over 10 months: 55 sessions were offered for CYP with T1D and their families across the region; monthly face-to-face sessions resumed after the COVID-19 pandemic; specific groups were established. Activities included a family fun day, two-night residential trip, cookery and sports workshops, monthly support meetings and newly diagnosed sessions. The Coordination Group enables young people from across the project to meet and discuss how to develop it and research topics to feed back to clinics and the CYP’s North East and North Cumbria Diabetes Network. The young people’s steering group meets regularly. Two episodes of the original podcast ‘The Highs and Lows of Type 1 Diabetes’ have been recorded and research has been conducted into access to insulin pumps for over-12s. Agenda days (adult-free discussions) have been held with other young people about poverty proofing diabetes clinics and moving from children’s to adults’ care. Thirty families attended a three-night residential to encourage independence, experience new activities away from home in a safe environment and build relationships. Funded by NHS England, it cost £40 per family, with donations covering costs for any who could not afford it. T1KZ has an established Facebook group with 900 members. Clinical Champions from every clinic help promote the T1KZ project. Staff from T1KZ regularly visit clinics to promote the project to families and get feedback. For the past two years the project has been funded by the ICB and now it is funded by the ICB with Novo Nordisk and donations. Regional events have been run in partnership with NHS teams.
User Feedback
Feedback is collected at the end of group sessions. There is also an annual online survey, which is anonymous. The Young Person’s Coordination Group meets four times a year and provides feedback and ideas.
Dissemination and Sustainability
This project has been facilitated by IiC, in partnership with all local children’s diabetes teams - for all children and young people in the North East and North Cumbria. The beneficial elements to take forward include growing the Professional Steering Group to share good practice and improve patient care across the whole region. Funding is required to run the project but changing from the Community Interest Company to a Registered Charity has increased funding and fundraising opportunities. It would be difficult to implement this inititive elsewhere as the organisation’s ethos and values are a core part. However, aspects like newly diagnosed days, fun days, day trips and the residential would be easier to transfer.
